PKD Foundation

#end PKD

Kansas City, MO   |  www.pkdcure.org

Mission

We give hope. We fund researchers, support patients and build a community for all affected by polycystic kidney disease (PKD).

Ruling year info

1982

Chief Executive Officer

Andy Betts

Main address

1001 E. 101st Terrace Suite 220

Kansas City, MO 64131 USA

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Formerly known as

PKR Foundation

EIN

43-1266906

NTEE code info

Kidney (G44)

Specifically Named Diseases (G80)

Birth Defects (G20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research

Since its founding in 1982, the Foundation has invested more than $50 million in research, clinical and scientific grants, as well as fellowships and scientific meetings,
making it the largest private funder of PKD research. The Foundation’s financial commitment over the years has seen results on a local, national and even global level, including initiating funding for young investigators from around the world; supporting innovative research ideas; and providing bridge funding to researchers to allow researchers world-wide to apply for larger National Institutes of Health (NIH) grants. Initiatives in research include:

Research Grants: Grant funding to PKD researchers who focus on the development of a treatment for PKD or on understanding the way in which cysts develop or
enlarge in PKD.

Core Grants: Supporting core research grants services and resources for PKD scientists so that Foundation dollars can be leveraged across the PKD research
community.

Drug Repurposing: Testing drug candidates to see if they can treat PKD.

PKD Outcomes Consortium Project (PKDOC): Working with the U.S. Food and Drug Administration (FDA) for regulatory approval to use total kidney volume (TKV) as an indicator for human clinical trials – a more appropriate measure of disease progression in ADPKD.

Scientific Meetings: Funding PKD-related meetings that bring experts together and provide continuing education for health professionals.

Tissue Donation: Coordinating donations of discarded PKD kidneys to research labs, allowing individuals to actively participate, and support discovery research.

Clinical Trial Awareness Program (CTAP): Supporting participation in clinical trials by raising awareness through PKD Foundation patients, families, and healthcare professionals.

Population(s) Served
Adults

The Foundation provides local services through its 61 volunteer-run Chapters across the country, and two virtual Chapters. These volunteers bring to life the mission of the organization by ensuring that no one faces this disease alone. Education meetings provide valuable information from health care professionals, while support activities range from lending a listening ear to organized group outings.

Chapters raise funds for the Foundation through events like Cocktails for a Cure and the Walk for PKD, the Foundation’s signature event to raise funds and awareness. Walks take place in more than 50 cities across the nation each year and have raised nearly $28 million since 2000.

On a national level, the Foundation provides in-depth resources and education about living with PKD to empower people to manage their health. Offerings include webinars, videos, a multi-faceted website (pkdcure.org/learn), online communities, and print
materials. The biennial PKD National Convention is the Foundation’s largest education event.

Population(s) Served
Adults

The Foundation raises awareness through marketing and public relations so people know what PKD is, understand the Foundation’s services, and can learn how to support
the Foundation’s mission. Marketing materials include PKD Progress magazine, PKDnews monthly email newsletter, social media, a blog, and pkdcure.org. Voices of PKD (pkdcure.org/voicesofpkd) features testimonials and stories about people’s experiences with the disease.

The Foundation plays a key role in legislative advocacy to support PKD-related initiatives. The PKD Advocacy Action Center (pkdcure.org/advocate) provides resources
and ways for people to advocate. The Foundation also sends Advocacy Alerts to inform PKD patients and families of legislative and public policy issues impacting PKD. The Foundation joins with other kidney disease-related organizations in events that allow advocates to meet with members of Congress to raise awareness of PKD and discuss legislative priorities.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Related Program

Education and Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Hours of volunteer service

This metric is no longer tracked.
Totals By Year
Related Program

Education and Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Related Program

Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

Context Notes

Grants & Fellowships Funded

Goals & Strategy

SOURCE: Self-reported by organization

Financials

PKD Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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PKD Foundation

Board of directors
as of 7/23/2021
SOURCE: Self-reported by organization
Board co-chair

Beverly Benson


Board co-chair

Rob Roth

Klee Kleber

Michele Karl

Andrea Kringstein

Craig Ramseyer

Jerry Waxman

Beverly Benson

Bill Brazell

Ashley Brown

Michal Mrug

Francis Towey, Jr.

Robert Roth

Paula Hutchinson

Katherine Dell

Georgina Habermann

Navin Manglani

Christopher Wess

Organizational demographics

SOURCE: Self-reported; last updated 07/23/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data